Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories. Today’s spotlight shines on Carter Dvorak, a 17-year-old musician & podcast host from Michigan who lives with Simplex.
1.When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.
When I was a baby, I was frequently hoarse, had silent acid reflux, and had bruising under my fingernails when I was a newborn. When I was about two years old, while my family was on a beach trip, a massive blister developed on my big toe. My grandmother did an internet search of those symptoms which brought her to an EB diagnosis. Shortly after, I was officially diagnosed with Epidermolysis Bullosa.
2. What are some challenges, if any, that you’ve faced as an individual with EB? How did you overcome them?
Having my type of EB has made it very difficult to do much physical activity. If I were to play on any sports teams, I would develop massive and painful blisters on my feet that would make it difficult for me to walk. Instead of physical activity, I turned my attention to music. Around third grade, I began taking piano lessons. Thankfully, playing on the piano did not give my hands blisters. In high school, I wanted to join my school’s marching band. This was the first foray into any type of “sport” in a long time. I was able to talk with my band director and we reached a compromise that allowed me to be in the marching band but not march the full show. I joined our pit section, a part of the marching band that does not actually march and plays auxiliary percussion on the sidelines. Being in the pit was an incredible experience as I was able to meet new people and make great friends. For my sophomore year, I earned the title of section leader for the overall percussion section. This was my largest struggle and triumph with EB in a long time.
3. What brings you hope when you are having an especially challenging day?
Whenever I am really struggling, what I come back to most is good news. I find that reading stories full of hope and human kindness can really place me in a good mood and give me the hope and energy I need. I just love hearing about people being kind to other people.
4. Have you met anyone else with EB? If so, what was that experience like?
I haven’t interacted much with people with EB in a while. Hopefully, once this pandemic is behind us, I can use EB Connect to find some people in my area.
5. We heard you have a podcast - tell us about that!
I have been listening to podcasts for almost five years now, and I have always wanted to create one of my own. I had tossed concepts back and forth for quite some time. A show that gives out advice. Another about waffles and diner food. Then, though a summer internship, I met a group of people that had a similar desire to work on a podcast. For a weekly assignment during this internship, the only requirement was to make something creative. I made a post in our Slack channel asking if anyone was interested in making a podcast, and I got around fourteen responses. A few days later, after a rough day of looking at the news and feeling generally anxious and hopeless about the world, I had the idea of PositiviTEA, a podcast about good news. I pitched this to the individuals that agreed to make a podcast and we immediately got to work. It was me and four other teens as the hosts. We also had teams for editing, music, and graphics. We recorded Friday and the first episode released on Sunday. Then we did it the next week. And the next. The group of hosts and the general “PositiviTEAM” really got to know each other and this project became something we all looked forward to. Once school began, we decided to move to a biweekly release given that everyone’s schedules being very busy again. The podcast is still going strong and there are a lot of exciting things happening as we move into October and the end of the year. It has been the most creatively fulfilling project that has given me the hope I need to continue forward and has changed the way I look at the world.
6. What other hobbies/interests do you have? Has EB presented challenges in these? If so, how have you managed them?
As already mentioned, podcasting and band have been two large interests I have currently. Recently, I have begun to increase my exercise and run a lot more. Running was always something I had wanted to do, and I even ran a few 5Ks in elementary school; however, I did not keep up with the habit in middle school and half of high school. This was largely due to the painful blisters I would get on my feel whenever I would run. With quarantine and being at home so much more, I have picked up the hobby again and I run and hike frequently throughout the week. While I still get blisters, I manage them quite well and I do not let them stop me from doing what I love.
7. Please share with us your dreams and aspirations – both short and long term.
This was a tough question to answer. In the short term, I want to graduate high school with a 4.0 GPA and get into a good college. I would also love it if the podcasts I am working on would be successful and bring hope and inspiration into the lives of others. Long term, I really just want to be happy. I want to work at a place that I love and be able to enjoy all parts of life.
8. What message would you like to share with others – especially kids your age – impacted by EB?
EB is strange. It’s complex and different in so many people and it just sucks. You already know this though. I would say that the best advice I can give would be to embrace EB. We cannot do anything to change it just yet which means that we are stuck with this disease. Don’t feel ashamed for what you cannot control. Whether you have to bandage constantly, are in a wheelchair, or get frequent blisters, do not let that impact how you feel about yourself. We are all strong, incredible, beautiful people no matter what. We’re special. And we are so much more than just an issue with our epidermis and our dermis. Do not let this disease hold you back. Embrace it. And go far.
9. What message would you like to share with others who do not live with EB?
The first thing I would say is to do research. Learn what this disease is and what it is like to live with it. Since you are reading an interview of a person with EB from Debra of America, I would say that you are succeeding in that regard. I would also implore you to spread the word. It’s awkward to start a random conversation with, “Hey, have you heard about this really awful disease?” However, if there is a place to talk about it and inform the people around you, please do so. I have heard EB referred to as “the worst disease you've never heard of,” and I would really love for that to change. It would be incredible if something like EB had the same global awareness as something like ALS.
10. How did you hear about debra of America?
I can’t think of any specific story. My parents heard about it when I was diagnosed. We utilized Debra as a great source of information, and we used the Nurse Educator frequently.
Thank you, Carter, for sharing your story! You can connect with Carter by sending him a message.
If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!